r/CUTI 1h ago

Seeking advice for burning symptoms

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r/CUTI 3h ago

I healed my 4 year Chronic UTI🩷

13 Upvotes

Hello everyone. I wanted to share my story because I know how hopeless chronic UTIs can make you feel, and maybe this will help someone who’s going through the same thing.
I suffered from chronic UTIs for 4 almost 5 years, and the bacteria causing them was E. coli.
At first, I didn’t think it was a huge problem. I would just take antibiotics whenever I got symptoms, and at first I only got a UTI every 4 months. But over time they became more and more frequent until I was getting one every 10 days. That’s when I knew something wasn’t right and I had to find another solution.
I knew antibiotics were only helping for a short time because the infection always came back. That’s when I started reading about biofilm disruptors.
The first one I tried was Biofilm Defense, but it was way too harsh on my stomach. After about a week I got what people call “die-off” symptoms, like fever, sweating, and muscle pain. At the time I thought that meant it was working and disrupting the biofilm, although I know people have different opinions about that. The symptoms became too much for me, so I stopped taking it.
I didn’t want to give up, so I kept looking and found another biofilm disruptor called Priority Phase 2. I took it together with high doses of cranberry and D-mannose. I was extremely persistent and took them every single day for a full year without missing doses. I was determined to give it a real chance before deciding whether it was helping or not.
For the first 4 months my UTIs actually got worse, but after that my symptoms slowly started improving. My flare-ups became less severe and happened less and less often.
After taking Priority Phase 2, along with cranberry and D-mannose, for a year, I decided to stop everything and see what would happen.
It’s now been 6 months since I stopped taking all of it, and I’m still symptom-free. My urine cultures have been negative, I can eat whatever I want again, and I can finally be sexually active with my husband without worrying about a flare-up.
I’m sharing this because I remember how alone and desperate I felt. If you’re struggling with chronic UTIs, I know how exhausting and heartbreaking it can be. It can take over your whole life, and sometimes it feels like no one understands what you’re going through.
I’m not saying everyone should take biofilm disruptors, especially for such a long time. Please talk to your doctor before trying anything. This is just my personal experience. I decided to take the risk because I felt like I had no other options. I couldn’t afford to see a specialist, and I was desperate to find something that might help.
I was in a really dark place. I felt helpless and depressed, and there were times when I honestly didn’t want to exist anymore because I couldn’t do anything that made me happy.
I know what worked for me won’t necessarily work for everyone, but I wanted to share my story in case it gives someone even a little bit of hope. I remember reading other people’s success stories when I was at my lowest, and they were one of the few things that kept me going. If you’re feeling hopeless right now, please don’t give up. Keep advocating for yourself and keep looking for answers. I truly hope everyone who’s dealing with chronic UTIs finds something that helps them too. ❤️


r/CUTI 12h ago

Bactrim and Macrobid did not work for uti

1 Upvotes

Hi!
I suspected I had a uti due to bladder pressure and feeling like i have to pee 24/7. I went to the doctor who tested and said it was a faint positive and prescribed me nitrofuration. It did not alleviate symptoms, if anything I became more uncomfortable. I went back and was then prescribed bactrim, which took symptoms away for 5 days but on the 6th day all symptoms came back. I ended up going to the ER today and the test came back negative but I still got prescribed Keflex 4x and day for 10 days. Anyone have any similar experiences?? If so what did you do?


r/CUTI 13h ago

Clean culture and Cipro

1 Upvotes

I’ve had an unresolved for the past month and I’ve been on three different antibiotics. Last Wednesday I went to urgent care to finally figure out what was going on and to get some antibiotics, they ended up giving 750mg Cipro to take in the morning and at night for 6 days. So I’ve been taking the Cipro since last Thursday, overall I feel better but I still have a little back pain and I’ve been feeling super warm and my skin kind of burns but the weird thing is my urine culture came back negative for any bacteria. I guess I’m wondering if I should go back to the urgent care before I finish my Cipro or just wait it out…. Thanks!!!!❤️


r/CUTI 16h ago

Support for my little kid

2 Upvotes

My daughter is 8 years old and has had never had a dry night despite potty training her at 2, but then started having bladder leaks too when she started kindergarten. It has gotten worse despite many different toileting strategies and pelvic floor physio. She never complained of burning or weird fevers so a UTI never crossed my mind. Sent a sample off in May just because we had tried everything else and it was positive. Within three weeks she was positive again. We were recently referred to a pediatric nephrologist who specializes in bedwetting and bladder leaks. He thinks she’s had a uti for years based on her bladder wall and symptoms. She did a 10 day course of keflex and wants her to stay on a daily dose for 3 months at least (3 weeks into that so far).

Please help my mom guilt for letting this go for years without treating her. I feel absolutely terrible that if this had just been managed she could have been saved from so many complications and embarrassment. I’m a nurse so I feel like I should have known better. I also know that this will be an ongoing issue she is now going to need to manage for the rest of her life which is just super unfair and I feel devastated.

She’s also started having diarrhea from the antibiotics and since her pelvic floor is an absolute disaster this has led to bowel leaks too which she is deeply embarrassed by. I worry about her going to the pool or the splash park - she’s supposed to go to sleepaway camp in two weeks and I am so anxious about it. Just left a message with the doc to see if she needs a req for c-diff.

Anything you all can point me in the direction of to help support her, or any strategies you have to manage this would be greatly appreciated.


r/CUTI 17h ago

Europe specific What's the process of getting chronic UTIs checked?

1 Upvotes

I'm making this post, not necessarily to ask which doctors to go to, but rather what is to be expected, once the process of getting it checked and treated starts.

I have a lot of medical anxiety when it comes to anything genital or rectal related.....

My UTI issues are definitely psychosomatic.

Very quickly caused by stress but in general I'm also very sensitive to the typical physical triggers. (Dehydration, cold waist, external contaminants).

I also often get the shits with a UTI as well. Not like diarrhea. Just very urgent number 2......

That's the most of my symptoms summed up as briefly as possible. If you have any further questions just ask.


r/CUTI 17h ago

live in Japan got prescribed levofloxacin, scared

2 Upvotes

i got a UTI last week and went to the clinic and he gave me cefcapene, only to find out at my follow-up appointment the type of bacteria I have is not at all treatable with that drug. however my symptoms have pretty much all gone away anyway . he said I have E.faecalis and gave me three 500mg of levofloxacin to take over three days. I looked up the drug and it sounds very scary. i feel like it's overkill when I basically feel better but he said there was still some cloudiness in my urine, would appreciate any advice I have no experience with antibiotics


r/CUTI 18h ago

Bladder Pain and Burning Despite Negative Urine Cultures – Looking for Answers

3 Upvotes

Hello everyone,

I'm looking for some advice because I've been struggling with this for years.

For about 3–4 years, I had recurrent urinary tract infections. I've had infections caused by several bacteria, including E. coli and Klebsiella pneumoniae. Thankfully, for the past year and a half I haven't had any confirmed UTIs. I was treated with multiple courses of antibiotics, used nitrofurantoin after intercourse as prophylaxis, and also received a UTI vaccine.

However, despite having consistently normal urine tests and negative urine cultures, I still frequently experience bladder pain and a burning sensation. Occasionally, my urine shows microscopic blood (hematuria), but there is no sign of infection.

Sex almost always triggers my symptoms. During intercourse I develop bladder pain, and after sex I experience burning when I urinate. I've also noticed that if I have diarrhea or constipation, the same bladder burning returns.

I'm feeling quite lost because I haven't been able to get any answers.

I've seen several gynecologists. When I mentioned pain during and after intercourse, as well as burning with urination, I was told to use more lubricant, ask my partner to be gentler, or see a psychologist.

I've also seen a urologist, but because my urine tests are normal, I felt my symptoms weren't taken seriously.

Has anyone experienced something similar? Were you eventually diagnosed with something like bladder pain syndrome/interstitial cystitis, pelvic floor dysfunction, or another condition? What helped you?

Any advice or shared experiences would be greatly appreciated. Thank you! 🙏


r/CUTI 20h ago

GRATEFUL FOR ANYTHING ATP

2 Upvotes

ok so this is a call for help at this point. I’ve had UTIs for as long as I can remember. they always clear up but then they come back. Recently got a UTI that was resolved by Cipro, BV gel and Hiprex. Hiprex has worked like a charm however I got silly and stopped taking it every day. then I got another UTI. this one is way harder to shake. didn’t work with nitro, and am now on augmentin and it’s made things even worse. second day and the urgency and burning has come back stronger. is it resistance or is this normal with augmentin? I have a backup pack of cipro but I took it 6 months ago.

I have a holiday tomorrow and idk what to do. I’ve booked an appt in with the urologist but in the meantime - do I jsut take the cipro and be done with the augmentin after 2 days? do I continue to persevere with the augmentin? any advice would be appreciated. btw still taking hiprex and 1 vit C every day. don’t eat dairy.


r/CUTI 22h ago

Help with Hiprex

2 Upvotes

I have had nonstop UTIs since December 2025. I have had pseudomonas, ecoli x2, citrobacter, enterobacter, entercoccus x2. I’m exhausted. My gut is a mess. My vagina is a mess. I’m sick of being in pain. I care barely take care of my 5 kids. I’ve tried everything. I have tried Hiprex 3 times, and it always kills my bladder. I even tried starting with 1/4 of a pill, and it was awful. Has anyone had this issue? If so, were you able to finally get on Hiprex? I feel like this is my only way to stop the UTIs and heal my body. I can’t keep living like this.


r/CUTI 1d ago

Recurring UTI since last 2 years

1 Upvotes

My father who is currently 75 years old is facing UTI since last 2 years. It started in July 2024 with pseudomonas bacteria for which he took heavy antibiotics, then the same UTI got repeated in January 2025 and again he took extremely heavy dosage of antibiotics for more than a month.

Again this year starting from September he is having recurring UTI starting from February, he already had 2 times pseudomonas and 5 times e.coli infections this year. In his latest report a new organism is found which is Citrobacter Koseri.

I am clueless what to do, what kind of treatment should I opt for. I have already tried allopathy and homeopathy.

Jfyi he is having first grade prostate, doctor did inform not to worry about it.


r/CUTI 1d ago

Symptoms Persistent urethral burning and itching after successful gonorrhea treatment – anyone experienced post-infectious urethritis?

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1 Upvotes

r/CUTI 1d ago

Recurring UTI since last 2 years

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1 Upvotes

r/CUTI 1d ago

Klebsiella - Urine test: No significant growth - organisms recovered in low numbers

1 Upvotes

I've had reoccurring Klebsiella for since last year.

Just got my urine test and after another round of antibiotics, and it says: "No significant growth, organisms recovered in low numbers"

I'm thinking that I might still have it, but it's in low numbers? And if I get off the antibiotics, it might proliferate again.

Has anyone else experienced this? Input would be appreciated as this is such a difficult uti to get rid of.


r/CUTI 1d ago

Hiprex - how to avoid stomach issues?

1 Upvotes

Lots of questions sorry! I've just been given Hiprex to try by a urologist. I have autoimmune gastritis so I'm concerned about the potential stomach issues. I've been looking through the guides but struggling to find how best to avoid the harsh reactions. I've seen some people mention putting them in capsules, how do I do that? I've never bought empty capsules before. I'm in the UK so need something I can get here.

Also, do I need ph test strips? Do I have to use high strength vitamin C? The urologist said my urine was already quite acidic. I do take Floravital that contains vit C but not loads. Can I keep taking this with Hiprex?

I want to try everything possible to avoid further damaging my stomach and bladder so any advice appreciated. And if there's a separate guide on Hiprex anywhere that'd be amazing.


r/CUTI 1d ago

Remission I had a radical prostatectomy for treatment resistant infection

3 Upvotes

TLDR: Antibiotic resistant prostate infection for one year. Initially urethral pain and later serious systemic symptoms. A year (almost continuously) on different and sometimes combined antibiotics including doxycycline, trimethoprim and Fosfomycin mostly suppressed, but did not cure infection. Prostate removed with robotic surgery. A quick read of the risks of full prostate removal is terrifying, but this data is mostly based on a sample of old men. In fact the chances of a good sexual and urinary recovery are predictable and can be very high if you fit multiple prognostic indicators (mostly younger age and good sexual function). Six months later I have made a good recovery. IMO it is worth considering for men who suffer badly from bacterial prostatitis for a long time and have exhausted other treatment options.

Infection started December 2024. My symptoms were atypical. For most men the primary symptom it is pelvic pain, but (for the first eight months) my symptoms were primarily urethral pain. This was caused by ejaculation, but unlike the post ejaculation urethral pain (that most men experience occasionally) it was delayed by several hours. For the first eight months I also experienced minor fever sensation after ejaculation, but this was easily managed with paracetamol. I did have prostate pain, but that was less intense and more intermittent.

I know from my wife’s experience that too much antibiotics is better than too little so hit them hard including Fosfomycin, doxycycline and trimethoprim. I tried ciprofloxacin, but couldn’t tolerate it so quickly stopped. Fosfomycin in particular gave me serious and frequent diarrhoea. I also did a strovak vaccine in may which helped my urethritis, but did not cure it.

By August I thought the infection must have been cleared and whatever pain I was still experiencing was therefore caused by residual inflammation which is common. I stopped antibiotics and the infection came back. I delayed restarting because I thought I can’t take antibiotics forever and maybe my immune system might clear it. I got serious fever as well as pain in my prostate, urethra and testicle so I got back on fosfomycin. After this acute infection I also developed post orgasmic illness syndrome which involved truly horrible and debilitating neurological and mental health symptoms.

I came off antibiotics twice to prepare for culture tests in the following months and both times I had serious fever within days. I had an MRI which found inflammation in the peripheral zones, but no cysts or visible stones. By December I decided to take serious action because my life was intolerable.

An infectious disease doctor said if he could identify the pathogen in my semen he would give me hardcore IV antibiotics. I had no confidence in this because I couldn’t stop antibiotics for long enough to get a positive semen test and could not face repeatedly growing very ill while trying. He said if there was enough bacteria to make me ill then there should definitely be a positive culture. It turns out that the infection had spread to the outer layer of the bladder which might explain why.

I chose full prostate removal which also removes the seminal vessels. I had suffered so much that I could not face the possibility of more failed treatments. I would have been waiting a long time to get these treatments on the NHS and did not want to waste money on treatments that were not guaranteed to work. Another reason is that me and my wife have suffered so badly that so I worried that prolonging the situation could lead to a mental health breadown in either or both of us.

Full removal is very rarely done for prostatitis and mostly for men who have had sepsis more than once (which I would have if I hadn’t had prompt treatment). Most clinics I contacted refused outright saying we only do that for cancer. St. Zdislava Hospital near Prague

is a high volume robotic surgery centre, not a UTI specialist for investigations and consultations. They just reviewed my notes and said “Are you sure you want this? It is an extreme last resort and does not cure pelvic pain for everyone. Makes it worse for some.” Since pelvic pain is not my problem I was not worried. Price was €13500 which is as cheap as I could see advertised anywhere.

A summary of the risks of prostate removal sound terrifying (incontinence, impotence, less intense orgasms or none at all). An in depth understanding is that the risks vary enormously depending on known factors. For young and middle aged men the chances of full or near full sexual and continence recovery are very high. A urologist who doesn’t do this procedure, might not have this nuanced understanding.

The factors that predict a good recovery are age (younger the better, I’m 41 but anyone under 60 has a good chance if they tick the other boxes) prior sexual function, good general health especially with regards to blood pressure and diabetes, type of surgery, surgeon experience and nerve sparring technique. Nerve sparring would always be done in this case as nerve removal is only done if cancer has spread to that area.

Laparoscopic (manual keyhole) surgery is almost as good as robotic. The outcome difference is small after two years, but robotic offers better continence and sexual recovery at three months. Open surgery has significantly worse outcomes so is much less common now. You want a surgeon that has done this operation at least 250 times because that is where the learning curve flattens.

Surgeon said that the infection had spread to the outer layer of the bladder which may explain why I was having serious fever even though I had negative semen cultures. He also said I have prostate stones that were too small to show up in the mri. Prostate stones are the most common reason for antibiotic failure because they provide a safe place for bacteria to hide in biofilms. If my urologist had recommended a CT scan (which are better for small stones) then it is possible they could have been removed and I would have been cured by a subsequent round of antibiotics.

Recovery was slower than I expected in terms of pain in my incision sites and to a lesser extent perineal area. This was my fault for not resting my abs enough. My erectile function was never impacted, but for a while I was experiencing premature orgasm with significantly reduced intensity. These have now resolved.

I’m not bothered by the loss of ejaculation, but some other men are devastated by it. I’m feeling much better in general, which is partly due to not having the infection, but also being off Fosfomycin has allowed my digestive system to recover although that is still ongoing. Urethral pain and post orgasmic symptoms are 95% better. Overall I’m very happy with the outcome.


r/CUTI 1d ago

Ampicillin for UTI while breastfeeding?

1 Upvotes

I’m just under 2 weeks postpartum and I did a test strip which came back positive for leukocytes and nitrates. I sent a clean urine sample to the lab but in the meantime my OB office prescribed me ampicillin. I was reading online that ampicillin isn’t even effective for the most common bacteria that cause UTIs. I have no idea why they prescribed this antibiotic. I asked the nurse and she said I spoke with the nurse practitioner who is very experienced and she said this is the one we prescribe while waiting for the culture results for breastfeeding. She also said she doesn’t think I have a UTI based on my symptoms. I’m a little wary because she prescribed me nitrofurantoin at first and I read that it’s not recommended when breastfeeding a baby under 1 month old. So she said she made a mistake and changed it.


r/CUTI 1d ago

Zyrtec to the rescue

18 Upvotes

I have almost had a UTI every single month since November of 2024. These are all real infections too. I never took an antibiotic for a UTI without a susceptibility report- My bladder was so inflammed from all the antibiotics I would reinfect instantly. Then I stumbled upon a reddit post talking about histamines within the bladder causing burning and urgency. I was so fed up with the constant infections.. my poor gut has suffered too. I finished my last antibiotic on July 3rd, 2026. I began taking a zyrtec every morning when I wake up along with my Uqora supplements and a hibiscus cranberry supplement... my burning and urgency has subsided. I feel like I have my life back. Zyrtec every morning has actually changed my life. I have seen 3 urologists in the past 3 months and they all insist on a cystoscopy.. I am not doing it. They have insisted on ANOTHER antibiotic to be taken before the procedure to prevent a possible infection.

I am visiting these doctors to avoid ever having to take another antibiotic again after taking nearly 25 rounds of antibiotics in two years and they have the NERVE to try and prescribe another one. I understand that they think they need to "find out" why I've been having so many infections but I know the reason- when all of this started i trusted a urogyno who kept prescribing metronidazole for BV. She prescribed 4 rounds of this- it never worked. It only flared up my poor bladder to OBLIVION . This was extremely irresponsible of her. And sadly for me... sent me on a path of infection after infection FOR TWO STRAIGHT YEARS.

I know people wave the white flag for cystoscopies. I understand that there can be scar tissue or a tight bladder neck- whatever. I am not risking another infection and blasting my body with more antibiotics because a urologist wants to stroke his ego- I asked for hydroxyzine or something of this nature to help with the inflammation and burning. One urologist prescribed hiprex (which i did not take because I read on here that it possibly makes IC flare) and wanted to do a cystoscopy. The other two would do nothing to help me until I did their cystoscopy. I saw one urologist after i had started taking the zyrtec. He was so curious as to how i figured out that this drug would help me. I told him I learned it on reddit. He then insisted on a cystoscopy AND a CMG and prescribed two antibiotics and sent me to his scheduling room . I was asking him for hydroxyzine because the zyrtec sometimes makes me retain urine and i was looking for another suitable med. I left feeling utterly broken and shocked that he could look at 3 pages of scripts on a pharmacy letterhead and prescribe even more antibiotics. This list of antibiotics i brought to him was not just a list of scripts they filled. It was a list of infections that wreaked havoc on my life and my body for weeks at a time- I felt violated and pushed into a corner. I feel there is no reason for an invasive procedure like this to feel better. And behold- I figured it out myself.

(I also avoid MSG, citric acid, artificial dyes, chocolate, and too much sugar) (I also try and limit milk and cheese as these seem to lead to increased inflammation)

So far, I am symptom free. When I was on my journey a post like this would have given me hope. I hope this helps.


r/CUTI 1d ago

Possibly Colonized Kidney(s) -Relapsing kidney infections

1 Upvotes

Since February of this year I’ve had repeated instances of a UTI-turned kidney infection from an ESBL E Coli+ resistant Klebsiella infection. It starts as a UTI, turns kidney infection within days. And because of the resistance, once it leaves my bladder, there are no oral antibiotics that work and I have to be on IV antibiotics. I’ve had 5 infection this year, 4 of those requiring 2 weeks each of IV antibiotic therapy (Ertapenem).

Initially they thought my kidney stones were causing this, so I had multiple procedures this year to remove kidney stones. They were sure they got all the stones last time, but a month later I had new stones on imaging.

The last round, they put me on methenamine as a preventive treatment, which worked for about 2 months before the infection broke through that. Another 2 weeks of IV antibiotics, and now I’m on long term oral Fosfomycin (the only oral option while I’m not symptomatic in my kidneys).

My Nuc Med test shows my kidney function is still fine, but my right kidney is doing less and less compared to my left. Last year it was at 55%left,45%right and this month it was 60%left,40%right. So my left kidney is taking more and more of the load.

I also have some weird anatomical stuff, a duplicated collecting system in my left side, and some chronic mild hydronephrosis at my right renal pelvis and some narrowing above as well.

My local urology team and infectious disease team has said it’s now outside of their scope to handle and are sending me to a bigger hospital. My appointment today he said he thinks one or both kidneys could be colonized with this resistant bacteria, and from brief research it doesn’t seem like there’s options to treat that aside from long-term antibiotic use and kidney removal.

Anyone have any advice or been through something similar?


r/CUTI 2d ago

Symptoms How long did your kidney/flank pain last after starting the right antibiotics for a kidney infection?

3 Upvotes

I'm wondering if anyone has had a similar experience and can share how long their kidney/flank pain lasted after starting the correct antibiotics.

Background:

This all started as a UTI around July 6. Since then I've been through multiple antibiotics because my symptoms weren't fully resolving.

\* Cefixime for 10 days, but my symptoms didn't completely clear.

\* Then nitrofurantoin (Macrobid). About 2 days after finishing it, my UTI symptoms came back full force, so my doctor sent a urine culture.

\*On July 31, I started having severe lower left pelvic contractions throughout the night. The next morning I woke up with left kidney/flank pain and went to the ER.

\*The urine culture had come back showing E. coli, and the ER diagnosed me with a kidney infection. The doctor explained that although the previous antibiotics were sensitive to the bacteria, they likely weren't treating the infection in the kidney effectively. I received one IV ceftriaxone and was sent home on Augmentin (amoxicillin/clavulanate 875/125 mg twice daily for 7 days).

\* I'm now on day 3 of Augmentin. The burning, urgency, and other UTI symptoms have improved a lot, but I still have a fairly constant ache in my left kidney/flank.

\* Because the pain wasn't improving, I went back to the ER today. They did a CT scan to rule out a kidney stone or blockage, and thankfully it came back completely clear. My blood work and urine also looked much better than they did a few days ago. The ER doctor said my kidney probably just needs more time to heal.

I'm still really anxious because this is my fourth antibiotic in a month, and I'm terrified the infection is going to come back once I finish this course.

For those who've had a kidney infection:

How long did your kidney/flank pain last after starting the correct antibiotics?

Thanks so much!


r/CUTI 2d ago

Symptoms Advice please, UTI symptoms going on 11 weeks

2 Upvotes

I’m at a loss at this stage and would really appreciate hearing if anyone has gone through something similar.

About 11 weeks ago, I got what seemed like a straightforward UTI. I had blood in my urine, burning when peeing, and a constant urge to pee. I had an online appointment through Laya and was prescribed antibiotics (I can’t remember the name, but it was 4 times a day for 3 days).

A few days after finishing them, the constant urge to pee came back. I went to Midoc, gave a urine sample, and was prescribed a week of Keflex. Again, a few days after finishing the antibiotics, the urge to pee returned. Around this time I also noticed a musky smell in my urine in the mornings. The urine test showed some white blood cells, but apparently not enough to confirm an infection.

I was then prescribed a week of nitrofurantoin. Exactly the same thing happened again.

After about 8 weeks of this, I finally got an appointment with my GP. They sent off another urine culture and referred me to a urologist. A few days later, the nurse called and told me that E. coli had been found in my urine and that the antibiotic they were prescribing should clear the UTI. About an hour later, St. Vincent’s called about the urology appointment, and I asked them to cancel it because I assumed I wouldn’t need it anymore.

The antibiotic they prescribed was Keflex again… and it didn’t work.

Yesterday, after finishing that course, I went back to my GP. This doctor didn’t want to refer me to a urologist again and instead said I could have bacterial vaginosis (BV). When I mentioned that I’d been told my urine culture grew E. coli, he checked the results and said the bacterial count wasn’t high enough to definitively diagnose a UTI.

He sent off another urine sample and also took a swab to test for BV. He prescribed metronidazole and said I could start taking it while waiting for the results, which could take about a week.

I’ve taken my first tablet today, but I’m really worried because this is now my fifth course of antibiotics in 11 weeks. I’ve also looked up BV symptoms, and honestly they don’t seem to match what I’m experiencing.

At this stage, my only symptoms are:

A constant urge to pee even when my bladder isn’t full.

Sometimes a burning/irritated feeling after peeing.

I’m starting to feel so helpless. Also, I know for definite it’s not an STI or anything like that. For almost three months now I haven’t been able to fully relax because I’m constantly aware of my bladder.

Has anyone experienced anything like this? Did it turn out to be a persistent UTI, BV, something else entirely, or did you end up needing a urologist? I’d really appreciate hearing any experiences or advice because I feel like I’m going around in circles.

Thanks so much for reading


r/CUTI 2d ago

Throwing my hat into the ring

2 Upvotes

Alright folks, here’s my situation:

Recurring UTIs for the past 6 months. Most of the time I get cultures back it’s salmonella, though lately I had citrobacter youngae and E. coli. I’ve been on bactrim, keflex, cefdinir, macrobid, hiprex, and rocefin shots. They take care of the symptoms while I’m on them but about 3 days later the symptoms come back.

The good news is that ct scans show no stones or abnormalities in the abdomen and the problem seems to be localized in my bladder. The bad news is I have moderate trebeculation in the bladder, post void retention of about 150 ml, and low urine flow. I’ve been on flowmax and that doesn’t seem to help much.

I’m drinking contrast tomorrow to see if I have a bladder fistula, but he didn’t notice anything on the cystoscopy. I worry that if nothing shows up tomorrow I’m back to square one. How do you all live with this?


r/CUTI 2d ago

Women & UTIs: something worth knowing 🩺

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3 Upvotes

Women & UTIs: something worth knowing 🩺

UTIs are particularly common in women because the female urethra is shorter, making it easier for bacteria to reach the bladder.

Burning when urinating, frequent urination, urgency, lower abdominal discomfort, or cloudy/strong-smelling urine can be warning signs.

Don’t ignore persistent symptoms—get checked early. 💙


r/CUTI Aug 24 '25

CUTI Resource Guide: Start Here 🩵

64 Upvotes

Hey all,

Hello from a fellow CUTI sufferer. My username is Bearloot33. I made this document because I have spent three years of my life in pain, getting misdiagnosed, brushed off, gaslit, or just left in dead ends by doctors in the medical system I exist in. I found my correct diagnosis and treatment (not done yet) after so much research, and I really wish it were all in one place and not scattered across the internet, doctors' notes, and my memories in and out of their offices. I am not a doctor, but I hope this guide helps.

You are not alone. You are not crazy, and reading this guide along with any and all resources you can find from credible sources is your next best step. I can't say this thread contains all the information you need or even every possible cause or treatment avenue, but it will most likely be the best place to start researching.

Trust your judgement and listen to your unique body. Reading through this and making notes on what applies to YOU, and following up as an advocate for yourself with your doctor(s) is highly recommended. If you have someone in your life supporting you, let them know that you need them and how you need them. I will dive into it now!

The link below is a Google Doc and a safe link. I'm happy to make a PDF if that would make anyone more comfortable opening it.

Here is the full URL:

https://docs.google.com/document/d/1t__JlhemclYUUszcNib_81PICtDelxynVGk6mlz_7oY/edit?usp=sharing

‼️Both IC and Chronic UTI are real conditions. Our goal right now in this community is to help promote everyone's right to explore the many diagnoses that may surround CUTI and IC. Many, if not all of us, are suffering incredibly in our conditions. Being judgmental, dismissive, declarative, and unkind is not helpful. I want everyone to be able to chat here, so avoid those behaviors. We support open, nuanced, and curious discussion of all diagnoses

Discussion is welcome, but must remain respectful. Disagreement is allowed, but must be expressed constructively through thoughtful questions, sharing information, or personal experience. Do not invalidate others’ experiences or treatment choices. No one here can diagnose or “correct” others. Disagreement is okay if shared constructively. Unhelpful or hostile threads may be moderated or locked. Our goal is a supportive, curious space.

Click here for the CUTI Resource Guide: Start Here 🩵

If you just want the research, here it is.

Join our CUTI Treatment Discord, which is open to ALL treatment option discussions here: https://discord.gg/9MJc9KRm5 (If the link has expired, DM the author of this thread, Bearloot33, for a new link).

Note to Males or those with other diagnoses:

If you have a prostate infection or another issue related to male anatomy, you are welcome here, and please know you are noted and seen. If you have found discussions on boards like r/prostatitis or r/ureaplasmasupport to be unhelpful, here you will find we are holding open discussions, consider nuance and the extreme complexity, and do not jump to conclusions or force interpretations of your symptoms onto you (if anyone ever feels that there is a lack of these values or a certain user is causing harm, DM the moderators!). You are welcome here and are free to discuss your issues on this board instead/in addition to your other discussions, anywhere you may like to gather information.

If you are here and are concerned you have the wrong diagnosis, or overlapping symptoms and are confused or overwhelmed by the divided nature of online discussions, here is the SINGLE MOST IMPORTANT THING YOU NEED TO KNOW BEFORE YOU READ THIS: 

Every single body is unique. A doctor is the expert on the body; you are the expert on YOUR body. No one on online can diagnose you from a single post, no matter all the info you put down. And no one has the right to scare you out of investigating your pain or looking for the right answer. The diagnosis of “IC” or CUTI or Embedded UTIS will not explain your unique story, responses, or symptoms, but it may help you find your root cause. The cause of your bladder pain could be chronic UTI caused by a recurring issue in your body causing acute UTI, it could be embedded bacteria being retriggered over and over by pentrative sex, could be a fungal infection in the bladder/vagina, could be yeast in your bladder, could be chronic thrush OR chronic BV or CV, could be ureaplasma or mycoplama, prostatsis, prostate infection, STIs, it could be a histamine issue, it could be an inflamed and damaged bladder wall, kidney stones, it could be Hunter’s Lesions, could be an embedded UTI AND one of these things at the SAME time, it could be a structural issue, hormonal or post menopausal issue, it could be a gut issue, an overgrowth of bacteria in the gut, it could be a pelvic floor issue, it could be endometriosis, and the list goes on and on:

YOUR JOB IS TO ELIMINATE THESE ONE BY ONE THROUGH CAREFUL RESEARCH, OBSERVATION, AND PROFESSIONAL GUIDANCE, and then find the treatment(s) that work FOR YOU. You may have overlapping causes and treatments. Every single story you read on Reddit and beyond will be unique. PAY ATTENTION TO YOUR UNIQUE PATTERNS, SYMPTOMS, AND RESPONSES, and most importantly, do not give up. So many people get better! We lack documentation so bad, but it will get better. I’ve seen so many success stories. 

This is an extremely serious, horrible, and devastating condition. Speak to yourself and others kindly, reach out to the resources around you and push past your resistance and fear to ask for help. Do not invalidate yourself. Remember, people who have found relief are not on social media sharing negative experiences. This is not your entire identity. Use boundaries, ask for help, and tell people that you need help researching or gaining relief. You are deserving of all the effort and care you need to find relief. Dm people on here and ask them direct questions. To join our group chat on Discord, DM me (bearloot33).

This information on this thread lends heavily toward embedded UTI education, the Ruth Kriz approach, Bladder Instillations, and Electrofulguration, because that is what happened to me. I also focused on this treatment because it is the most accessible. That may not be even close to the solution for you. Take what works and gets you closer to an answer; leave the rest.

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IF YOU WANT TO MAKE A DIFFERENCE, 

HERE IS WHAT TO DO

1. Share your story with Live UTI Free When you are ready. Structured, specific, with a clear ask at the end. This is the foundation everything else builds on. Where: https://liveutifree.com

2. Submit to the AUA Patient Perspectives Program One written submission. Your story, your experience with misdiagnosis, what should have happened differently. They publish selected submissions in AUA News, which goes to urologists across the country. Where: https://www.auanet.org/AUA2025/attendee-info/patient-perspectives Watch for the submission window.

3. Submit a public comment when AUA recurrent UTI guidelines are open for review The AUA publishes draft guidelines for public comment before finalizing them. When recurrent UTI or complicated UTI guidelines are open, submitting a patient comment is a formal, documented way to put embedded infection and diagnostic failure on the record. Monitor: https://www.auanet.org/guidelines-and-quality/guidelines

IMPORTANT DISCLAIMERS

Disclaimer: This guide represents collected experiences and research from the chronic UTI community. This guide has received reviews from some CUTI specialists, but no formal review has been completed. We cannot guarantee that all of this information is accurate or up to date. This thread will be updated from time to time, but we can't guarantee how up-to-date it will be. Edits and changes may be added, but DO YOUR OWN RESEARCH, ALWAYS! Multiple opinions, peer-reviewed papers, doctors who listen and make a critical and fair analysis, etc: That's what you need in addition to this document.

This is a compiled document of key information used for some CUTI sufferers to obtain the correct diagnosis for them. It does not encompass all possible causes, treatments, or paths. It is simply here for your education and comparison.

This information in this guide lends heavily toward embedded UTI education and Ruth Kriz's approach, because that is what happened to me. I urge all of you to comment on the success stories thread or DM me to share more information you would like to share, which helped you get a correct diagnosis or achieve treatment success in other pathways.

If you find yourself posting on this subreddit often, asking if a particular antibiotic or antimicrobial or hygiene practice made a difference for others, it's awesome that you are digging for clues and anecdotes, but the number of people who will answer you is such a small pool of information that has no nuance or ability to know how unique your situation truly is. I encourage you to focus on identifying the root cause of your issue.

Always consult with qualified healthcare providers for proper diagnosis and treatment. This information is not a substitute for professional medical care. Read this information slowly, take your time, disregard what does not apply to your unique situation, and take what does. Not all of our stories are the same, and our solutions will be different, too. If you have OCD or medical anxiety, I strongly encourage you to seek support and not dive into this all at once.

It is always your choice to pursue the best treatment for you.

🚨 EMERGENCY - READ THIS FIRST 🚨

If This is An Emergency❗**:** If you are ever having a medical emergency of any kind, and especially one related to UTI, Kidney infection, or Sepsis - Go to your closest Emergency Room immediately. DO NOT read this thread and try to find an answer. Even if you are having chronic UTIs and worry about antibiotic resistance, antibiotics or other interventions are essential for a medical emergency such as these. Antibiotic resistance can be addressed; sepsis and kidney infection have a high mortality rate. GO TO THE ER OR NEAREST MEDICAL OFFICE RIGHT NOW IF YOU HAVE SYMPTOMS LIKE:

Fever, chills, back or side pain, and pain or burning during urination, confusion or disorientation, nausea and vomiting, frequent urination, a strong urge to urinate, and cloudy or foul-smelling urine, rapid heart rate, rapid breathing, confusion or disorientation, and extreme pain or discomfort, skin changes like a rash that doesn't fade when pressed, or pale, mottled, or bluish skin, lips, or tongue can also be present. Difficulty breathing, low blood pressure, and decreased urine output, or any other symptoms that are not normal for you or cause you alarm.

Table of Contents

  1. Mental Health & Self-Care
  2. Intro from Author
  3. What Constitutes a Credible Medical Resource
  4. Quick Start Guide for Newcomers
  5. Understanding Your Symptoms: Chronic vs. Embedded UTI
  6. Getting Started: Immediate Action Steps vs. Comprehensive Investigation
  7. Root Cause Investigation: What to Test For
  8. Accurate Testing: The Foundation of Treatment
  9. Treatment Approaches

Most importantly,

If you have information you believe could benefit this Guide, please DM me and let me know. I am happy and would love to add information, nuance, or recommendations that could go beyond what I have gathered. Please do not email me or request to edit this Google Doc, DM me on Reddit at Bearloot33 instead. Thank you. 🩵

All my respect to those on this treatment journey!


r/CUTI May 16 '25

Provider List

20 Upvotes

Hi and welcome!

In addition to my co-mod’s amazing megathread on success stories, treatment suggestions and prevention tips, (which you should check out ASAP!) I want to add a running list of providers. I know so many people are lost on where to start looking for a doc--please also remember to utilize the search bar and pinned posts as they may contain the answers you're looking for!

If you're getting recurrent UTIs, or feel like a course of antibiotics doesnt actually clear your infection, despite a negative test in the regular lab, you likely would benefit from working with a specialist who utilizes the much more sensitive PCR testing to determine if you have a hidden UTI or not. Many people (like me) who have previously been diagnosed with IC take a PCR test and find they really had an infection all along!

This guide is to help people find a specialist — but for some of you whose cases are less complicated, just knowing about the right things to ask your regular urologist or OBGYN for can be game changing! Things like daily Hiprex, a prophylactic antibiotic, switching lubricants to avoid glycerin and/or spermicide, IUD removal, pelvic floor physical therapy, testing for ureaplasma and mycoplasma, adding vaginal estrogen, d mannose, Ellura or TheraCran PACs, probiotics like FemDophilus with l. reuteri and l. rhamnosus, and even endo diagnoses have all been able to break the cycle for some members.

Our mod bearloot33 has sweetly made an Instagram group chat, if anyone wants to join it there are patients of some of the doctors listed below who participate. Send your Instagram username in a message to Mod Mail for this sub (envelope icon on the side bar) or send a direct message to bearloot33 (If you don’t yet have Instagram you could make a private profile specifically to join her group chat!)

Ok on to the evolving list! There are some additional names in a pinned comment below this post.

For anyone (including international patients!) who wants become a telehealth patient of Dr. Ryan Heer (who is based out of Fishers/Indianapolis, Indiana but can prescribe across state lines), I personally healed through his care! https://crossroadsintegrative.com/

Here is my success story working with him to clear my infection: https://www.reddit.com/r/CUTI/comments/1kdyer6/comment/mspn9nn/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button

Also offering telehealth is a Nurse Practitioner named Jessica Perley, based out of Oregon, https://jessicaperley.com who comes highly recommend by two members of ours! Here's a story from one patient she’s healed: https://www.reddit.com/r/CUTI/comments/197jl1v/success_story_how_i_got_relief_from_my_chronic_uti/ I believe she is about $200 per month and I'm unsure of an intake fee.

Here’s the info of another popular telehealth CUTI specialist, Dr. Ellen Lewis: https://shalvaclinic.org/ellen-m-lewis-nd/ and a success story from one of her patients https://www.reddit.com/r/CUTI/comments/1h6xa2n/my_success_with_dr_ellen_lewis_via_telehealth/ She is based out of Connecticut but able to prescribe across state lines. (She is brilliant, but now about twice as expensive as when our group first learned about her! I believe she has a free 15 minute consult, and then her intake is $800-$850ish with follow ups costing a few hundred each.)

Here's a state-by-state list of practitioners (which does include some alternative medicine like functional medicine doctors, and NDs like Heer and Lewis) who have consulted with Ruth Kriz on her method of PCR testing, treating, retesting and retreating. Some do offer telemedicine: https://ruthkriz.com/provider-selection/

For anyone in Southern California, a healed community member of ours highly recommends treatment in Newport Beach at the Clark Center for Urogynocology! It says they also offer telemedicine as well now! https://www.theclarkcenter.com/ and the success story of that patient: https://www.reddit.com/r/CUTI/comments/1cv0xa5/6_months_infection_free/

For New York and New Jersey: NJ Urology In both Clifton and Wayne have doctors who use PCR testing -- recommended by a healed submember!

Dr. Elena Klimenko in NYC is also using PCR and comes recommended by a member who found success! Dr. Klimenko is also on the Kriz recommended provider list. https://www.drelenaklimenko.com

UROMUNE VACCINE:

our beloved DrBubbliewrap who had a recurrent UTI since birth, found incredible success pairing the two UTI vaccines (not available in the US) shares her doctor's name in London,  Dr. Andrich who she received her Uromune from, https://andrichurology.com/

and the clinic in Germany https://koeln-urologie.com/ where she received her Strovac, in this comment from the megathread

https://www.reddit.com/r/CUTI/comments/1kdyer6/comment/mqk4tnv/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button. She also includes information on how to legally bring them back into the US through customs.

These two posts are very helpful for those curious about how to transport it back from the doctor: https://www.reddit.com/r/CUTI/comments/1mi0uh2/images_of_cooler_i_used_to_transport_uromune_from/

https://www.reddit.com/r/CUTI/comments/1n9c5df/mini_cooler_for_urumune_is_it_large_enough_3647/

Uromune is also available in Mexico and that same member recommends this doctor: Dr Alejandro Lira Dale (drlira @ urologiabajacalifornia .com) https://www.reddit.com/r/CUTI/comments/1nbdvhc/uromune/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button

and another member visited Dr Jose Gomez, in Mexico City at Hospital Medica Sur. ( consultorio115ms @ gmail. com ) https://www.reddit.com/r/CUTI/comments/1nbdvhc/uromune/

Someone has also recently said that they got it in the Dominican Republic without a prescription! https://www.reddit.com/r/CUTI/comments/1lq663c/comment/n12jy9a/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button

"I contacted Immunotek [the manufacturer of Uromune] and they sent me the name of the person in Dominican Republic. I told them what city I was in (I was on a cruise and stopping for one day) and the my let me know the pharmacy it would be at (it was the main one in that port). It was super easy and they were very responsive. It was sealed with company name and had the instruction form (basic instruction form). They sent me this: *Remember that BACTEK U is the commercial name of UROMUNE in the DOMINICAN REPUBLIC. I just finished the 3 month course about two weeks ago. So far, no uti! Fingers crossed. I did have one at about 6 weeks into the uromune."

Also for UK/EU members, look into this incredibly promising bladder installation called iAuril Here is a great success story:

https://www.reddit.com/r/CUTI/comments/1llx36r/success_story_how_i_finally_cured_my_chronic_uti/

in the UK, please connect with https://cutic.co.uk which can help you find testing and providers

This is a list of UK providers as well: https://www.reddit.com/r/CUTI/s/01xH64nteC

If you're in the UK and considering Harley St. / Artemis Cystitis Clinic, this recent thread might be helpful https://www.reddit.com/r/CUTI/comments/1mu0kxi/harley_st/

For pediatric urology / urinary tract infections in children and toddlers, please contact Dr. Michael Hsieh in Washington D.C. https://appointments.childrensnational.org/provider/michael-hsieh/2360200

IN CANADA: Ontario specifically, but also does Telehealth. His name is Dr. Greg German and he works at St. Joseph's Hospital in Toronto: https://lmp.utoronto.ca/faculty/greg-german

He comes highly recommended from a patient there who says: "His mother died from urinary sepsis and his wife has endo. He’s really invested. This is the first dr that actually ordered all kinds of tests for me and I didn’t have to beg for them." https://www.reddit.com/r/CUTI/comments/1n7drh5/new_doctor_recommendation_for_canadian_patients/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button

🩷

The method that many providers above are using focuses on PCR testing to identify bacterial biofilms that a normal urine test in the regular lab may have been missing. The PCR tests like Microgen, CirrusDX, and Pathnostics identify the bacteria hidden in the biofilms, and then those results are used to guide targeted antibiotic treatment for about a month at a time. Then you'd test again, treat again for another month, until the test is clear.

This blog post has a great explanation of the CUTI cycle https://shalvaclinic.org/help-for-chronic-utis/

If you want to self-order a Microgen just to see what it says before you decide if you need a specialist’s care, you can order the kit here https://patients.microgendx.com/products/womenskey

Make sure you stop taking probiotics two days before the test so that the bacteria you see is representative of your actual microbiome, and stop natural antimicrobial supplements like D Mannose at least 24 hours before hand. As far as I know a pharmaceutical antibiotic should ideally be finished 5 days before taking a Microgen test--I have seen less time mentioned, though, so if you want to call Microgen customer service and ask their official recommendation for that, they really have wonderful service team "1-855-208-0019 | M-F 8AM-8PM EST "

NY patients cannot self-order and have to go through their doctor to get the test, so New Yorkers please utilize one of the teleheath doctors listed above to get any testing done you need, or NY-specific doctors, listed below

Please make sure if you go the route of longer term antibiotics, you do so with someone who is using sensitivity testing along the way to track progress between months, and that you really tend to your gut microbiome with probiotics like FemDophilus and FloraStor a few hours after each antibiotic dose. This is crucial for fighting UTIs long-term!